Sisters: Part 3

Have you ever been caught at a railroad crossing for a really long train? It feels like the train is never going to end, until suddenly, there it is. The end! Just three more train cars. Wait. Did the train just stop? WHY DID IT STOP? No. Please no. Please tell me that train isn’t backing up now. And so, train car after train car passes before you again, stops and then pulls forward, eventually allowing you to be on your way. Well, that is sort of what it feels like living with a child with a urea cycle disorder. Except, I’m not watching some train pass by. I’m under the train. And it isn’t going by slowly and safely, it’s full speed, oblivious to the fact that it just ran me over. And there I lay, under the train, trying to keep it together until the train passes, planning to pull myself up and continue on my way. Each train car is a distressing side effect, a worry, a scary possibility, a thing to make my heart stop and fear for Matthew. And, just when I think “the train is gone. It’s safe to stand up now” the darn thing changes directions and runs me over again. Throughout this journey, we’ve been hit by many such trains. Many of which weren’t but so unexpected, but they knocked the wind out of us, nonetheless.

Recently, we were pummeled by another train. A high speed, out of nowhere, hit from behind kind of train. The genetic results came back on the girls and we found out that they are both carriers for OTC. Right now, this doesn’t really mean much for them. Our prayer is that they, like me, are asymptomatic.(So far they are, but there is a possibility of that changing for all 3 of us at any point in our lives. Although, I’m not sure how likely that is) Our prayer is that they never experience an ammonia spike. They seem to naturally manage the condition. While their bodies can process proteins, they have both always been light on protein in their diets. They very rarely eat meat. They like milk and cheese, but don’t over indulge. They shy away from a lot of the beans and other heavy protein foods, too.

Our fear, though is that both of them carry the possibility of this pain in their future. Maybe, by then, science will be able to screen, have better medicine, better ways of protecting a child with this disease. They are at an advantage, now that we know they are carriers, but it doesn’t protect them from some day having a son with OTC. I hate that at some point they are going to have to decide if it is worth the risk to have kids, or will have to decide if they want to continue treatment, or if they want to list their son for transplant. As a parent, you want to protect your kids from bad things. I can’t protect them from this.

I had so hoped that they wouldn’t be carriers. I guess, if I’m honest with myself, somewhere deep inside I knew that they would be, just as I knew I was a carrier.

At least they have us. At least they have each other.

best friends

Best Friends


Bracelet Fundraising

Silicone bracelets

Silicone bracelets

As an extension of our fundraising efforts to help support the cost of Matthew’s upcoming liver transplant, we’re now offering silicone bracelets with your favorite hashtag #HealingMatthew on the front and “A.S.A.P.” on the back. These bracelets are for sale in the Square Marketplace for $3.00 each. They come in three sizes, Adult, Youth, and Toddler (8″, 7″, and 6″, respectively) and are an awesome way to show your public support for our son. You can also purchase them directly right here. We are still maintaining opportunities to give directly to the family via PayPal, as well as tax-deductible donations via Matthew’s HelpHopeLive page.

If you’d like to know more about the design, here you go!

Why Grey?

The color grey was selected because of Matthew’s mascot, affectionately called ‘Hospital Elephant.’ Hospital elephant was a gift Matthew received while still in the intensive care unit at the Children’s Hospital of the Kings Daughters. It’s been a favorite toy of Matthews ever since, and joins him on all his major appointments, as well as making frequent appearances during physical and occupational therapy sessions. This is the same reason for the elephant for those of you joining Team Healing Matthew for the upcoming CHKD Run for the Kids.

Hospital Elephant

Hospital Elephant

Why A.S.A.P.?

Two reasons, one silly, one not: “ASAP, whatever that means… probably ‘Act Swiftly Awesome Pachyderm.'” We’re big fans of Horton Hears a Who in this house, and it was on regular rotation for Matthew’s sisters around the time he was born. The idea of ‘as soon as possible’ takes on a completely different meaning in the context of this disease. From the moment of first suspicion that something was wrong, everything was a massive rush. Getting Matthew from the birthing center to the children’s hospital, as soon as possible. Getting everything signed to authorize hemodialysis, as soon as possible. Interpretation of lab results determining whether one treatment or another was effective, as soon as possible. And ultimately, hopefully, a life saving liver transplant, as soon as possible. Early detection, rapid treatment, and fast acting nurses and doctors saved Matthew’s life, and the ‘A.S.A.P.’ is a reminder of just how critical those fast thinking, fast acting moments can be.

We hope to offer additional Healing Matthew centered items in the near future, including reprints of the artwork produced for last October’s fundraiser ‘Music for Matthew’ in Raleigh. Thank you for finding us and following us here, on Facebook, and Twitter, as well as on Instagram via the hashtag #HealingMatthew. We can’t imagine how we would navigate this road without the moral and material support we’ve received from friends and loved ones.